Thousands denied dignified end by 'postcode lottery' for palliative care

A vast disparity in health care across the country is resulting in hundreds of thousands of people being denied a dignified and comfortable end to their lives, a committee of MPs said yesterday.

A vast disparity in health care across the country is resulting in hundreds of thousands of people being denied a dignified and comfortable end to their lives, a committee of MPs said yesterday.

There are 520,000 deaths a year in England and many patients suffer severe physical and psychological discomfort in their last months of life but only a quarter have access to palliative care, the Commons Health Committee said.

Surveys show more than half of people would prefer to die at home but only one in five do so. Around 55 per cent die in hospital and a World Health Organisation survey of six European countries showed that England had the highest hospital death rate.

David Hinchliffe, the chairman of the committee, said: "We hear much of the 'choice' agenda in the NHS at present. But for those who are terminally ill, choices are not being realised. We would like to see more done to support people in their own homes."

Costs of caring for terminally ill patients at home were put at £2,500 for 14 days, compared with £4,200 in hospital, by Marie Curie Cancer Care.

The charity told the committee that an investment of £100m to provide care at home would release £200m for other hospital services.

The committee says one health minister predicted "massive savings" from such a shift and it says that "urgent measures" should be taken to develop the strategy.

The MPs found "worrying evidence of inequities" in the provision of services. The cancer network with the highest needs had the lowest proportion of palliative care beds for its population. Two of the networks with the lowest need had the highest proportion of beds.

Mr Hinchliffe said: "Some affluent areas have plenty of hospices, while others have few. Those with complex needs or from black and ethnic minority communities seem less able to access services."

The biggest disparity was that a quarter of terminally ill people had cancer, but they occupied 95 per cent of hospice places. "Those who are terminally ill with, say, motor neurone disease or heart disease are most unlikely to use specialist services," Mr Hinchliffe said.

The charity Help the Hospices said one estimate suggested that there may be as many as 300,000 people dying from progressive diseases other than cancer each year who need palliative care.

The MPs highlighted once again the gap between personal social care, which is means tested, and health care, which is free, as a cause of continuing injustice. Differences in interpretation of the rules meant patients got free care in one area, while those in the neighbouring area had to pay for it.

"This is unfair and incompatible with the principle of a national health service," the committee says. "We are convinced the only way to ensure there is equity in access to NHS continuing care is to introduce national eligibility criteria."

At least 100 posts for consultants in palliative care are unfilled. Help the Hospices told the committee: "Significant resources are being used to recruit non-existent consultants." The Government has set a target to double the number of consultants by 2015, which the committee "applauds" as an "ambitious goal".

Paul Burstow, a Liberal Democrat health spokesman and a member of the committee, said: "Palliative care is a Cinderella service in the NHS. It is a scandal that as many as 300,000 people a year die from chronic diseases without good palliative support. Much more must be done to develop palliative care to make it available to more people who need it."

Tom Hughes-Hallett, the chief executive of Marie Curie Cancer Care, which has 2,000 nurses caring for terminally ill cancer patients in their homes, said ministers "must take on board these realistic recommendations" if the Government is to deliver on its promise that everyone should have the right to die at home.

"Since this inquiry was announced six months ago, around 75,000 people have died of cancer in the UK but only a quarter died at home. We will continue to campaign for choice which we know is of vital importance to our patients and their carers," he said.

We are living longer but spending more of our extra years in sickness rather than health, latest figures show.

The Office for National Statistics said over the past 20 years, total life expectancy had increased at a faster rate than healthy life expectancy - the number of years of life free of chronic disease or disability.

Between 1981 and 2001, the time expected to be lived in poor health for men rose from 6.5 years to 8.7 years and for women from 10.1 years to 11.6 years.

There are 130 voluntary hospices, 42 NHS palliative care units and 27 children's units. Around 4 per cent of people die in hospices.

THE CANCER SUFFERER

'Having my husband at home softened the blow'

Lambert Fick died at home surrounded by his family in August 2002. He had been diagnosed with an extremely rare cancer of the duodenum - part of the intestine - and after major surgery and months in and out of hospital he learnt at the end of July that it had spread to his lungs.

Gilly, his wife of 30 years, said: "He said he didn't want any treatment. He knew this was curtains and asked to be discharged. He was determined to spend whatever time he had left at home with myself and our two daughters. It was what we wanted - it was absolutely vital."

With the help of a home care nurse, Rhiannon, from the charity Marie Curie Cancer Care, the family set about making his last days as comfortable as possible. "Rhiannon came into our lives for that last glorious period. She entered the house when we, as a family, were at breaking point," said Gilly.

As a specialist dental surgeon Lambert, 57, had the medical understanding to know what was happening to his body. Gilly said: "He diagnosed each phase of his final collapse. The night he died we knew the end was coming and my girls and I could not cope. Rhiannon stayed with us, calming and tending Lambert as if he was the most precious person in the world. She made his passing bearable."

She added: "Lambert's wish was that he would not be allowed to struggle but would simply fall asleep. Rhiannon ensured that he, and we, got that wish."

"I never wanted him to go into a hospital or hospice. I could not conceive losing my husband in any other way. Having him at home softened and enriched his ending."